CFS Support Services – ‘Self-Help’

I have raised the issue mentioned in this post with my local CFS (Yes, I hate the term CFS (Chronic Fatigue Syndrome) but that is the name of the local service provided) service and they agree that it is ‘confusing’ and needs to be edited. I have also spoken to Portsmouth MPs Penny Mordaunt (during our meeting a month ago) and Stephen Morgan’s team about my concerns. I noticed the problem just after xmas so the problem has been around for at least 6 weeks, I’m not sure when the website was last updated. As patients, we are constantly told to not use Dr. Google but in this case, it is the website of a CFS support service and so the information should be reliable and well-informed.

Imagine you are a newly diagnosed C.F.S or M.E patient (more likely to be CFS in Portsmouth). You have been referred to St Mary’s CFS team. While you wait for your appointment you check out their website.

https://www.solent.nhs.uk/…/our…/chronic-fatigue-syndromeme/

From the ‘How can we help’ tab you find out that Graded Exercise Therapy (GET) is a ‘treatment’ they provide (You are a new patient so know nothing about GET or what it involves). This post is not about GET – that’s a whole other issue that has been the subject of some of my discussions with the St Mary’s team.

Then you see the ‘Self-help’ tab. Great, you can start taking care of yourself while you wait for the appointment.

https://www.solent.nhs.uk/msk/self-help/

‘Health and fitness’ – you wonder if that’s where you’ll find info on GET.

https://www.solent.nhs.uk/msk/self-help/health-and-fitness/ – See screenshot of part of the page.

This page contains –

– ‘NHS Get Fit For Free’
– Couch to 5k
– Cycling
– Swimming
– iprescribe
– NHS fitness studio
– Exercise referral schemes

I was, and still am, very worried about how many NEWLY DIAGNOSED patients have been confused/mislead by this webpage. Nowhere on this page does it have a disclaimer that it is not appropriate for M.E/C.F.S patients.

The central NHS team who control the website content have contacted me to say it will be edited, the problem has been created by St Mary’s offering support for more than one chronic condition. Exercise is appropriate for other illnesses but not for M.E/C/F.S. A disclaimer/edit is needed ASAP, I’ll be keeping an eye on it.

I plan to create info packs for newly diagnosed patients, that’s something that is on my VERY LONG to-do list, I haven’t even started to create anything yet.

I do a lot of stuff away from the visibility of social media, this is just one of the behind-the-scenes issues that I have been working on recently. I am just one of many advocates working blooming hard for M.E patients. I am yearning for the day that I don’t have to nudge ‘specialists’ about website content though.

Love

Sally

and Foggy (OBVIOUSLY)

xxxxxx

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